I am constantly learning that for most non-disabled folks the default mindset regarding disability is tragedy. There seems to be some kind of genetic need to understand difference as abhorrent and wheelchairs as the symbol of captivity. I keep running in to these attitudes, the attitudes that completely shore up the hierarchy between those who walk and those who roll, or those who talk and those who sign, or those who think quickly and those who ponder slowly, or those who love chaos and those who require sameness. A hierarchy that leaves one feeling somewhat pleased to simply not be the other. And it always surprises me.

-Dave Hingsburger

I don’t have the energy or, frankly, the time… or the calm, measured but kind words that would be necessary to really do this justice, but I am probably going to be writing a series of posts about the response my disabilites have elicited in my new environment. I’m not in NYC anymore, but a smaller city, studying at a divinity school attached to major Ivy League university. It’s nice here.

But people at divinity schools have a different way of dealing with the direct visual experience of another’s disability (than do solipsistic undergrads at big urban universities, for instance), and I’m finding that I have none of the tools to navigate this. I am, to put it quite bluntly, finding myself utterly worn to a frazzle by the solicitous care, concern and curiosity of genuinely good, kind, compassionate people into whose sense of mission and calling I fit precisely into a prescribed role.

This is often a role that (as the readers of this profanity-laced and often immature collection of rants will immediately recognize) I have some trouble fitting into–and I’m not really sure that I want to.

I’ll have to write more on this in the time to come. For now, suffice it to say that I’m in the market for new ideas on how to nicely (that’s important, everyone is nice here, the Waif is not so nice, so this requires careful planning) send off signals that I don’t want to be approached–because one of the interesting side effects of the disabled-person-as-object-of-mercy model is that normal social rules of approach are suspended. If I’m using my wheelchair, I eat my lunch with a book in front of my face to ward off the smiles, pats on the back, strokes on the arm, and “oh honey–not a good day today?”s that come my way. It doesn’t work. Nothing works.

I will not quit smoking. It has become the only way for me to take a moment outside in my chair without the deluge of offers of help.

Of course, like any struggling grad-student-parent-with-a-preteen-and-a-toddler, I’d LOVE some help, but not in the ways they mean. They’re lovely people, the pastors-of-tomorrow who approach me, and I’d trust them anywhere–so I’m seriously considering hitting them up for babysitting when they come rushing up with their offers of assistance.

Either they start steering clear of me lest they be put on the spot, or I get some free childcare. WIN-WIN, right?

Kristina’s post and the responses in the comments thread, however, led me to stick my long, poky, crip-power-disability-advocate nose into the business, and talk for a while about why I think “awareness” is, quite frankly, damn near worthless without the willingness to confront the ableism that awareness itself can inspire.

Here’s what I left on the comments thread:

I was able to google up a cached version of Smockity’s blog, and I’m sorry Kristina–I really don’t think this is a person who will be helped much by all the “awareness” in the world. Honestly, when Smockity only thought the child was spoiled, her response was within the realm of the frustrated-but-amused; when she was forced to confront the idea that the child might be autistic, her entire attitude underwent a change to semi-revolted sneering.

While it might be tempting to characterize ableism as a matter of ignorance, or as the inadvertent stigmatizing that occurs through the well-meaning attempts at “compassion” by the unaware, the fact is that for many, disability and difference (particularly neurodivergence) can provoke something very close to genuine hatred. Until we can accept this, and until ableism is called out for what it is and not simply termed a lack of “awareness,” it will never be possible to truly approach the heart of the problem.

Smockity’s response to the comments which attempted (with remarkable diplomacy) to assist her in developing “awareness” was a perfect exhibit of this sort of ableism. From her immediate medicalizing of the suggestion of the autism spectrum (“well, I don’t know her medical diagnosis!”), to her continued use of scare quotes around the term disability, to the subtle intimation that autism or no, the child she observed (and by extension the autistic children of the commenters and for that matter any other autistic child) was more the product of poor parenting than anything else, and the unstated but ever-present sense in all of her replies that she didn’t quite believe in this autism thing anyway, her tone never varied. Nothing in the (frankly, far sweeter than deserved) comments attempting to raise smockity’s “awareness” were able to penetrate that ableism.

The community of special-needs parents and the community of disability advocates are too often separate, and in many ways do not even speak each ther’s language. The special-needs parent wants to believe that if the observer knew of her child’s unique situation (“she has asperger’s” or “he has Tourette’s”), they would welcome her child with love and understanding, or at least benign neutrality. The disability advocate has often spent a lifetime forced to raise “awareness” of his or her condition (often whether or not the advocate would choose to: a certain amount of explanation is demanded in exchange for even the most minor of disability accommodation), and knows all too well that with awareness of disability comes the relegation of the disabled person to the status of “one of them”–and where the ableist is concerned, “they” inspire revulsion, fear and often hatred.

If the special-needs parenting community is unwilling to accept these realities as its own, the crusade to spread “awareness” will be at best a plea for charity (“please have pity on us, my child simply can’t help it!”) and at worst will place parent and child squarely in the crosshairs of an ableism with which they are unequipped to contend. The tools of the advocate–which include an unflinching willingness to identify bigotry and ableism for what they are, and the willingness to grapple with the anger and grief of such a realization–are a necessary part of arsenal of the parent who hopes (and fights) for full inclusion.

What do you think?

(A later note: I do want to point out that, as a divinity school student, my favorite part of the story is that while this lady sneered at a small child, she was unable to do much more about it [like, say, offer help] because she was busy reading her Bible. Because every post that references Kristina must contain this word, I’d like to say that that part of the story is particularly awesome.)

I’d like to start gradually bringing this blog up-to-date, in terms of where I am now. Where to begin?

Well, I graduated. With my worst grade ever in (of all things) bioethics, and a fairly decent thesis, and a graduate school acceptance, I graduated and actually made it to the ceremony.

Here’s my standing-up pic, which is very misleading, for reasons I’ll explain below.

Right.

Now, here’s what actually happened.

I had every intention of graduating in my wheelchair. Of making a big pain in the ass about it if I had to. But in the end, I wasn’t sure I’d even make it (total health breakdown before the end of the semester) and by the time it came around I thought that just making a phone call to disability services and asking a few questions would suffice.

Questions like “how much walking?” (Not very much. Just up to get to diploma and back down.) There’s a place to sit the whole time? (There are seats set up for all the students, and you’ll be able to sit the whole time.)

All of these answers were true, but neglected to mention that before we’d be allowed into these seats, they’d line us all up and keep us standing while we waited to make the grand entrance. For forty-five minutes. Seriously.

To make a long and pretty ignominious story as short as possible, I made it about twenty minutes before trying to get some help, which was too late, and hit that point where there wasn’t going to be any more standing. Or walking. That day.

Crawled about 50 feet, made it to the edge of a planter, and thought a lot about how this was my own fault versus how someone who worked in disability services could not know that the question “how much standing will there be during the graduation?” included the obligatory standing-in-a-line beforehand, and wondering if I’d be able to make it up there at all. It didn’t look likely.

As it turned out in the end, I did. I hadn’t made it there alone, after all. It wasn’t a place I could have gotten on my own, and there hadn’t been a moment of the previous four-OK-five-but-who’s-counting years where I hadn’t depended on someone else’s love and support to carry me through.

So here’s the real picture.

Yes, he carried me all the way up there, and held onto me while I was handed my diploma, and then brought me back safely.

I had other help too, getting cleaned up from the big crawl so I could go up there without looking like the little match girl.

So that’s that. My love-hate relationship with my alma mater notwithstanding, it turned out to be a beautiful day.

So as I write about the changes that have happened since, it’s probably worth stopping to remind myself that I continue to not do any of it alone. And to say thanks. And I love you.